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TFMR advice

(34 Posts)
39Suzy Fri 20-Apr-18 07:27:47

We made the heartbreaking decistion to TFMR earlier this week at 24 weeks as our little boy has a severe brain abnormality. We dont even know if he would have reached term and if he had, would have physically and mentally disabled, even to the extent we dont know if he could have breathed unaided. I know we are making the right decision and had the first part yesterday so cant feel.him moving and not feeling 'pregnant' but am just crying constantly.
We went through the bits that come next and have agreed to an autopsy (with the geneticstesting we are having we are hoping for some answers.... our initial results were clear and the nature of the malformations indicate interuption/ infection in weeks 5 to 8) but am struggling with the decision to see him after he is born. Anatomically he will look perfect, just like a small baby, and would welcome any experience with this. I think i am scared as i dont want to be haunted by the image however, think it will be best in the long run. I am hearbroken

39Suzy Sat 12-Jan-19 09:49:30

@molliejx

39Suzy Sat 12-Jan-19 09:48:57

@mollyjx

39Suzy Sat 05-Jan-19 19:18:49

@fatas hope your recovery is going well as sounds like it has been a rough ride.

@poppyj1 i am so sorry for your loss.

I dont think there is a right time to try again and no matter when this is, it is a very anxious journey balancing ongoing grief and hope for the future. I am now almost 26 weeks with a rainbow little brother. Everything is going fine and having regular scans and checks but passing that 24 week stage i was last time is hard plus despite all the scans being well, still feel like someone has made a mistake and we will get the 'i am really sorry' chat.

Wishing you both all the best for a positive and healthy 2019 x

PoppyJ1 Wed 14-Nov-18 03:47:45

Hi Fatas,

Thank you so much for your kind reply and for the encouraging story about the woman you know with the 3 kids now.

I'm really sorry to hear you're having one of those endless physical processes. My second MC was a bit like that. I found it puts the breaks on the emotional recovery if you're still bleeding and passing things, however small. It's a kind of limbo period in which you want to start feeling better but you can't get from one toilet stop to the next without some kind of anguish smacking you back down.

I am sure part of you will feel better when the HCG clears and you know the physical process is over, especially as it brings the fresh hope of a new cycle. The emotional obviously takes much longer but I do think sometimes the physical trauma is underestimated, especially given that it can develop into general health anxiety and trigger horrible memories during normal menstrual periods.

Wishing you some relief and peace soon and of course all the very best when you try again.

Fatas Sun 11-Nov-18 13:35:32

I’m sorry to hear you’re going through this. I just wanted to hide away and not see anyone. I thought I was recovering okay, until I went back to work. I spent the weeks I was absent away from work tucked up at home and spending time with my 10 month old and now I’ve had to enter the big bad world again! I’ve not yet returned to normal- my hcg is stuck at 25 and I saw something (small) come out the other day, also still having streaks of blood every few days.

Give yourself a bit of time to heal, take your folic acid, eat healthily and look after yourself. I’m hoping to go for genetic counselling, been referred but not heard anything yet. I think I’ve made my mind up about trying again now. Someone said on here that when the hope outweighs the fear that’s when it’s time and that resonates with me.

Sounds like you’ve really been through it with two miscarriages and then this, I know someone who had two miscarriages, tmfr at 24 weeks and has three healthy babies.

I was lucky that after my miscarriage I had a lovely baby boy and it helped with my recovery, can’t imagine having to go through it with no children. Sending my thoughts to you

PoppyJ1 Sat 10-Nov-18 01:10:24

Hi all,

I know this thread is intermittent but I wanted to add my experience. I'm so sorry to hear of all your losses and what you've all been through. I've just been through this and it has truly been the worst time of my life.

I found out at my Harmony scan at 10w5d that my baby had a brain abnormality that was unlikely to be compatible with life. I had to wait until 12 weeks to confirm in hospital, but the issue was so obvious it was the first thing we saw. The doctors aren't sure exactly what went wrong but settled on severe hydrocephalus and aqueductal stenosis; baby's head was measuring a whole week ahead and his brain was not filling the space. We were told he would die very young, possibly immediately because he may not be able to breathe or feed. We opted to terminate because we couldn't risk putting him through that. We got our Harmony results on Thursday (all low risk and male gender confirmed) and terminated yesterday. I was given hand and footprints and told by the lovely doctor hat I have plenty of time to try again (I'm 36 and have no kids, but two MCs before this).

I feel very lucky this was picked up early; I can't imagine how terrible it must have been for those of you to go through this so much further into pregnancy. I am also relieved that following the procedure, I am 100% sure we made the right decision. But it is truly heartbreaking and I'm finding it hard to be around people, especially putting on a brave face around children (my DP has 4 older kids and we are telling them today).

I am keen to try again ASAP but DP wants us to go through counselling for both the grief and the impact of TTC and MCs on our relationship.

nervousFTM Thu 04-Oct-18 18:47:12

Sending all the love @Fatas - so so sorry you've had to go through this xx

39Suzy Thu 04-Oct-18 17:35:26

I am sorry for your loss @fatas. Sending you lots of love x

Fatas Wed 03-Oct-18 17:47:43

Thought I’d update on here for anyone going through this. CVS results confirmed baby was t21, I was already booked in for TFMR at this point (consultant had confirmed that due to hydrops and septated hygroma baby was very poorly and would miscarry anyway)

I don’t want to offend anyone with babies with t21 as I know my choice is not always agreed with, but there are many babies with t21 who have severe medical issues and don’t survive to birth- as indicated by my scan. I think there is a common misconception about this generally- not necessarily amongst those receiving the diagnosis.

Anyhow, took 14 hours and 4 doses for pills to work and then an injection and then another two doses after injection for placenta. That didn’t work so ended up having ERPC 20 hours after everything else had passed to pull out retained placenta.

Seem to be recovering okay physically. I didn’t ask to see fetus, I found it hard enough feeling it being delivered. I was asked if I wanted a memory box and I said no to this too.

I feel a bit like they may have thought I was cold hearted, but I just couldn’t face it. I think if pregnancy was a bit further along and baby was more developed I would have opted for both of these.

Obviously I am devastated, but I felt the choices I made were best for me at that moment in time.

I hope no one has to go through this, but unfortunately someone on here will one day- so if you ever want to get in touch for an offload, questions anything-please do.

Sending my thoughts to anyone who is going/ gone through this- it’s truly bloody awful. X

39Suzy Sun 30-Sep-18 20:07:55

@hayleyfx so sorry for your loss. Thanks for your best wishes x

Fatas Sun 30-Sep-18 17:10:45

@hayleyfx- no not too much information at all. Thank you so much for sharing with me. Sorry for your loss x

Fatas Sun 30-Sep-18 17:06:18

They told me the reason they do t offer it on nhs is because of the increased risk, though if medical doesn’t work they then perform the surgical procedure anyway

hayleyfx Sun 30-Sep-18 17:05:47

Firstly @39Suzy I’m so so sorry for the loss of your little boy, sending you so many hugs. On a brighter note - congratulations on your new pregnancy! That’s brilliant. I hope you have a very smooth, easy and healthy pregnancy, you deserve it. ❤️

@Fatas just want to say I went through the same thing last month. I was 14 weeks exactly when I delivered my baby. We had to have a termination as he was diagnosed with an encephalocele which isn’t compatible with life. On 6th August I delivered him, I’ll briefly tell you how it went -
I took 4 tablets at 11am. By 2pm nothing had happened except a few minor cramps so I had to take another dose. Was feeling frustrated. Took another 4 tablets at 2:30pm. Within 20 minutes I had really bad cramps, I had to take dihydrocodeine & paractemol at this point. The bleeding didn’t start for another hour or so (finally) and by 4:30pm I went to the bathroom, sat on the toilet and I had a strong urge to push and awful cramps like contractions. I don’t want to scare you with this but I did have to push quite hard and I looked down and saw a head first, then arms, then legs. I didn’t expect this at 14 weeks. He looked exactly like a baby - just a smaller version. Then I had to wait to deliver the placenta - it only took about 10 mins though. After that, the pain just disappeared. It was such a relief but so sad too. I held my baby for half an hour and took pictures etc and it helped me however it’s so different for everyone. Do whatever feels right for you. Sorry if it sounds a bit scary and a bit TMI - I’ve had 3 losses now so I’m totally used to talking about it.
I hope it goes as easily as possibly for you and I’m so sorry that you have to go through this. Sending you the best of luck for the future and lots of healing thoughts 💕

Fatas Sun 30-Sep-18 17:04:32

Thanks, I don’t want to go through the labour, but also don’t ry want surgery as risks are increased with surgery.

So guess I’m stuck with the medical procedure.

39Suzy Sun 30-Sep-18 16:55:54

@fatas i dont think the NHS offer surgical options which may be why they have told you this but speak to BPAS if you don't want to go through a labour (you can get a referral from the NHS). I think they dilate the cervix to perform the procedure but either way it has to dilate so don't let that put you off.

Hope it all goes as well as these things can x

Fatas Sun 30-Sep-18 16:50:55

Thanks for your kind words. Yes the hospital called today and gave me more info on what happens with the shared cremation so I’m going to go with that.

I guess I’m so worried that at 13.5 weeks my baby won’t look like a baby, but I’ll ask about the picture- perhaps it could be something I can look at when I feel ready. I’m just not sure seeing it right now will help me in the process.

The surgical is not an option at this many weeks gestation, I think because they have to stretch your cervix surgically and this carries with it a little extra risk. I think I could have requested, but I’m going with the lower risk option. If it fails though, then I have to have surgery so I’m really hoping it’s as straightforward as can be.

39Suzy Sun 30-Sep-18 12:27:12

@fatas i am so sorry you are going through this now. My heart truly goes out to you.

At 13.5 weeks you should be able to have a surgical termination (and be knocked out) rather than go through labour. But if that isnt possible, it shouldnt take 18 hours as there is a big size difference in 13.5 weeks and 23 weeks. BPAS or ARC will be able to give you advice on this.

Have the hospital given you any information about the cremation or burial options? They should do this at the time that you give permission for the termimation with options. I am not too sure about private options for you..... we were advised at 23w 6d that there wouldnt be that much ashes (and we would only scatter them anyway) so decided to go with the hospital option. It was a lovely service and the ashes are scattered in the crem next to the baby memorial garden where we are having a plaque.

I felt very apprehensive about seeing him but ultimately, so glad i did. If you don't want to, you can ask the hospital to take photos for you. It is a personal choice and as the grief starts to lift, it is an image which i treasure.

Don't beat yourself up about being older, that is probably irrelevant. I know the risks increase with age but ultimately, this can and does happen to anyone ❤

It is a time of shock, confusion, anger and the most heartbreaking upset so take some time to be kind to yourself, and if that means a bit of time off work then do it. Sending you lots of love and strength x

Fatas Sun 30-Sep-18 11:20:15

Thanks for the updates here. I currently going through this. But my baby will only be 13.5 weeks

I don’t think I want to see him/her. He/she won’t be very formed and I’m scared the image will be with me forever. I don’t even know about cremation- will there be enough remains to have any ashes? Or maybe I should just let the hospital cremate and scatter in remembrance garden. So many things to think about.

I’m lucky in that I have an 11 month old, but also feeling unlucky that there may never be a sibling for him.

I’m trying to look on the bright side (is there one). I have a gorgeous baby who is keeping me sane at the moment.

I’m scared about the procedure- I didn’t know it could take up to 18 hours and scared that it might not work so may have to be operated on.

I’m also annoyed with myself, I’m an older mum and I feel like I’ve tempted fate somewhat.

I thought I’d be going back to work this week. It’s not always useful to mope at home and I guess the trauma is not as bad as losing a baby at 20 weeks. Am I being by niave?

39Suzy Sun 30-Sep-18 09:47:31

Congratulations @cyclingfangirl that is lovely news and thank you 😊

CyclingFanGirl Sun 30-Sep-18 09:14:18

Congratulations @39Suzy flowers that is lovely news.

Thanks for the update. I am currently lying in bed cuddling our new baby, she is 12 weeks old and utterly amazing. The pregnancy was a really anxious time, but it has been so worth it. Wishing you all the very best for you and your family.

flowers

39Suzy Sat 29-Sep-18 15:28:43

Hi, just thought i would update this thread a few months down the line as i hope it will help someone else in this position.

The weeks and months after i gave birth were incredibly hard. I cried every day for about three months.... the smallest thing would tip me over the edge as the realisation of the last few months hit me time and time again. Someone likened it to a parallell universe, particuarly as my due date approached. I ended up going back to work (grudgingly) at the beginning of August, the monday after i should have finished. It was shit.... my Outlook diary fired a hundred and one reminders for antenatal appointments and i was sobbing by 10am. My manager was pretty useless! Collegues struggled to find any words to break the ice and several went out of their way to avoid me completely. But, it got easier and a month in and it felt like i had never been away (even if some collegues STILL havent spoken to me!). Those early days, we didnt want to see or speak to anyone. Noone could understand how we were feeling, and repeating the same answers to the same questions was draining. But, as the days and werks passed, it became soothing to get out, see people and be 'normal'. That first friday night drink with my friend was tough, i burst into floods of tears three times in about two hours! But, we (and our friends and family) soon got used to our new 'normal".

At home, it was hard going as DH struggled to come to terms with the loss after ignoring it for weeks. And with my due date approaching and impending post mortem and funeral growing closer it got tougher. As much as he was trying to support me and put on a brave face, i could see he was hurting. Probably more as he had shut it out so long.

The funeral (at the end of August) was a big turning point. The PM results were imminent but it felt lile a big release to get through this day. The PM results we have had since have confirmed that we made the right decision (i spent many a night racked with guilt that we had made a mistake!). If he had gone to term, he would have suffered a fatal seizure during or soon after birth. I look back now thinking that labpur and the end result was the most amazing thing i have ever done. No it wasnt the outcome we wanted but gradually it is the overwhelming love, not the loss, we are feeling. It gets better....

Today, we have a framed photo sat in our bedroom of our little boy clutching his teddy. I only regret not taking more pictures as it brings me so much comfort.

My due date was surreal.... we both took a day off work to do 'something'. To me it wasnt really that meaningful as we now have a birthday but for DH it was a big deal. We decided on a long country walk and a pub lunch. But in the morning, frustrated and upset by the lack of AF (which i thought had got back to normal the previous month) decided to take a pregnancy test. It was positive (explainedwhy i was 2 days late!!). We cried, shook and were stunned by disbelief. I am now 11.5 weeks pregnant and gradually coming to terms with the fact that we may have a baby to take home with this one.

I just want to say thanks for all the help and hope i can pay it forward one day x

39Suzy Fri 27-Apr-18 19:10:03

Thanks for the replies. I feel much more composed today and generally a feeling of 'acceptance' rather than anger.

DaniAlvez Thu 26-Apr-18 21:56:00

I'm so sorry you are going through this awful time, I had a TFMR 9 years ago with my first son as he had bi lateral cystic kidneys and no waters around him. We knew we'd made the right decision as he would never have survived outside of me. These first few months will be very hard indeed. I had counselling privately but couldn't start until about 3 months after J died because I couldn't talk about it all without crying. 9 years on and I have 2 more children and they both know about their big brother. Just last week we showed them the photos of him taken just after he was born. They were completely cool with it and said he looked like my second son.
It's the worst thing that's ever happened to me but the positive thing is that you do get through it and you will be happy again one day. The one thing I will say is that I have always talked about J and used his name. He is part of our family and all my friends and family acknowledge that fact as if they had met and known him. It really matters that he is not forgotten. Sending you strength to get through this x

CyclingFanGirl Thu 26-Apr-18 21:33:12

Hi @39Suzy.

I'm so sorry to read that you are struggling at the moment, but it's normal. I struggled so much in the first few weeks, but it did start to get easier with time. That's not to say I don't think about our son every day and some things set me off crying easily when I connect them to him. In particular I found the cremation to be a surprising turning point, it was very simple, just myself and DH, no service, but strangely comforting.

Please take lots of time for yourself and your DP, do whatever feels right for you, talk about it or don't talk about it (I was definitely a talker, to the right people) and take time off work (I needed 10 weeks).
I found that the experience has affected me in strange and unexpected ways, my concentration span was poor, my ability to make decisions was totally knocked sideways, even simple tasks felt stressful and complicated. When I spoke to a counsellor she helped me to understand that these things were normal after such a traumatic experience and they have also settled with time.

I have been in contact with SANDS who have been really supportive and I would highly recommend speaking to them.

Be kind to yourself, keep posting here if it helps and know that you're not alone, lots of people are thinking of you.
flowers

mytether Thu 26-Apr-18 14:16:10

Hi @39Suzy. I haven't been through exactly what you have but have had two TFMR. So I think I understand something of what you are experiencing. These early days are extraordinarily tough on so many levels. It's exhausting to have to somehow live with your grief and as you say, think about results, talking to medical staff, etc. I just said on another post that I felt very isolated and alone, even though my husband and family were there for me. But to me, as a mother losing her baby, it is a deeply personal thing, partly because you were sort of the only person who 'knew' them.

I do want you to know that you are not alone though. So many of us have unfortunately been through something a little similar. You will get through this and be happy again, although you will never forget. It is amazing sometimes where you find the strength, but you do.

I am thinking of you and wishing you all the strength you need over the next few weeks and days, and after that too. Remember that grief comes in waves. If you feel a bit better for even a few moments, don't feel bad about it, and if and for times when you feel absolutely desolate again, know too that it will pass. Lots of love. flowers

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